By guest blogger and sarcoma survivor, Julia McGrath

It didn’t take me long after being diagnosed with sarcoma to come to the conclusion that cancer terminology can be really confusing. But here’s how I choose to see it…

Most folks gather with their friends at the local coffee joint to have light conversation, but when I see my fellow cancer survivors we might discuss things like the terms “cancer-free”, “in remission”, and “cured”. Through our conversations, it was apparent that the survivor, the oncologist, friends and family use the terms differently and at different times.  Doctors treating sarcoma patients tend to celebrate NED (no evidence of disease), sight the statistics, and say that a patient is “in remission” because sarcoma cancer does often come back. Friends and family might say that once a removal surgery takes place or chemotherapy is finished that the cancer is gone, and feel that it is gone forever. But as one of those patients I debate in my own head about when a sarcoma patient is considered “cured”, because that’s the elusive term in sarcoma we’d all covet to use. I have tended to stay somewhere in the middle thus far in my journey — I know the cancer can return, but I focus on the positive. So in that middle space, should I tell everyone I am “cancer-free”? How do all these terms feel to those of us who have been diagnosed, whether in or out of treatment? How does that play into our emotional state and stress levels?

According to scientific data and terminology, I am in complete remission because no new cancer has been detected since its removal in October, 2015. Am I “cancer-free”? And when am I “cured”? CT scans cannot detect small cells. And I know that statistically, my sarcoma -if it is going to return- will most likely come back in 2-3 years. But from what starting point? Is it 2-3 years from the surgery, when it was removed, or is it 2-3 years from when I ended treatment (in my case, chemotherapy), about 6 months after the surgery and clear scan? Confused yet? I know many of us are.

After all, my oncologist gave me the option of doing one round of treatments (six cycles, each lasting 21 days). I could have opted out. But I asked myself–what if there were loose cancer cells floating around in my body that the scan had missed? How could I be sure I was truly “cancer-free” without a little chemo? Should I less confidently say I am “in remission” and then wait and see?  

Now I visit the radiologist every six months for a scan to see if any cancer large enough to see has returned. I anxiously await the call from my doctor saying that everything looks good. I know I will feel much relief when I can theoretically ring the bell and announce that I am FIVE years clear. Five years in the world of cancer generally means you are “cured”, though there are never any guarantees – especially with sarcoma.  

Until then, I take one day at a time and look forward to the future as “chunks” of time. I will say I am doing well — I exercise, plan family activities and attempt not to think about it. I try not to focus on how I define my cancer state, or dwell in the anxiety that walks next to me 24/7 in the reality of these terms and statistics. Every day that I wake up and believe that I am “cancer-free” is a day I am very thankful.

Please join me in celebrating sarcoma survivorship, however you personally define it, by registering for the April 29th Sarcoma Stomp!!! Click here to register for my team, Julia’s Jamboree, whether participating in-person or as a Virtual Stomper. Or, click here for more information.

With love and hope,

Julia

The Paula Takacs Foundation for Sarcoma Research | Charlotte, NC 28271 | (704) 516-5113